Category Archives: Glossary

The lovely cliche, “We are all patients” is just that. At every medical conference, or in the new lobby of the hospital, that phrase is offered. While it is true in a statistical sense, it has a snarky sound to the new patient, reeling from his induction into the medical world, foreign and threatening. It can really seem snarky to those who know how poorly patients can be treated, how overwhelming the language of illness is, and how chaotic a hospital setting is for most.

The patient experience for someone who speaks the language, whose friend is a specialist, or can understands the imaging reports and lab values, is in stark contrast for those lacking such resources. Not much we-ness in those two patient groups!

Certainly the medical people who suddenly become patients, or are thrust into being a caregiver, can offer their own colleagues insight into those new roles. But rarely is the newly diagnosed patient, one who has never “known” how the system works ready to take on this role. He is often the patient at the greatest risk–especially when told, “Be your own best advocate.” Most of the time, that “Be your best” does not give the patient anything, but a reminder of how lost he is.

The recent convert to patienthood who can navigate the system may be a wonderful translator of the dialect and the cultural mores of that system, but with limited impact. If that medical pro turned patient is not also willing to change that culture, to be more open, to provide ready access to information, and to teach to the wider world, most patients will not be well-served by this new awareness. As a society, we will continue to be inefficient in our care of the sick, have poorer individual and community health, and waste incredible sums of money.

Patients could be given readable information about what the standard of treatment is for their disease. They can learn that the oncoloigst should recommend more frequent imaging, or that there are other treatments than the scalpel and chemotherapy. They can learn how to enhance their daily health, how to monitor side effects, to clarify their own health concerns. Patients can be guided to credible online resources or patient groups so they can ask the new question, compare notes, learn the changing vocabulary.

Doctors can tell patients that diagnosis is tricky and requires testing and feedback along the way. They can remind patients of the uncertainty and complexity of cancer, or a chronic disease. They can welcome questions about side effects, new studies, and treatment options. The dynamic will shift as the patient becomes more knowledgeable, or has greater medical needs, and the doctor must shift as well.

Patients and their providers need to partner with one another, with the patient at the center of all those relationships. The patient needs ready access to his records, information relevant to his needs, and an atmosphere of collaboration, appropriate to the moment. Anything less is damaging and wasteful, and we ain’t got time and money for business as usual.

Nothing catches your attention more than being told you have an incurable disease. Quick translation= “you’re dead”. All the words of encouragement, “we’ll do our best”, “you’re a fighter”, “the doctors could be wrong” are drowned out by the word “incurable”.

Doctors don’t like to answer questions like, “How long do I have, doc?”, and patients don’t like to ask such things, in my experience. But the internet and medical journals do give those answers, and rarely flinch when asked. The only real stats I can remember about my diagnosis of kidney cancer, or its more melodic renal cell carcinoma, was that about 37,000 patients were diagnosed annually the US, and about 13,000 died annually. Doing some quick math, I figured that I had three years, if I were lucky. It is now more than eight (Now TEN!) years.

Being diagnosed with terminal cancer puts you on a new journey, say the more eloquent of us. We welcome one another, remind them that this is all unknown, that it leads to a new country, the land of the sick, and certainly requires a new language. Five year survival, times to progression, overall survival, ablation, and retroperineal are the new phrases you encounter.In addition to those darn Latin words of endless syllables, that new language hijacks words we once admired, like “progression”. Progression once meant to go forward, like passing into the next grade, or getting the vote, surely good things. Not so. Progression suddenly means that the cancer is on the move again. Regression is the good word in this new language.

We can’t even pronounce half the words that are thrown around in this new world, and don’t even know that all the body parts under discussion. What is a collecting duct, have I always had a venous thrombus, and what is the difference between metastases, lesions, masses and tumors? Is positive one of those words that means the opposite of what it was?

Just as this new language swirls around you, the alien disaster grows insidiously, betraying all you trusted, someone tells you with great earnestness that you must now be your own best advocate. Isn’t the doctor supposed to be better at this than the patient? Does no one else find it ironic that the same body which produced the tumor in ignorance is now asked to defend itself, to be skilled and capable of fighting off the threat to life and to choose the weapons to do so. Am I now supposed to choose the meds and the techniques, advocate for one treatment over another? Hell, I don’t even believe that this has happened to me?

In my older world, advocates had causes and clients. They went to councils and boards, court rooms. To whom do I plead my case in this new world? And where is the court of appeals, should I need a new trial? Can I get new representation? Does my doctor even know what he is talking about? Of course, “trial” doesn’t mean what it used to, anyway. It’s more of a battle, with the weapons or medications being passed out to blinded patients by blinded physicians. Maybe half the weapons are dull or non-existent–placebos. Welcome to this new world.

There is no Stage V, of course. That is the ultimate “progression”, another form of “passing” that we talk about quietly and somberly. I wanted none of that, didn’t want Stage IV, for that matter, and yet I had been on that grim journey for many years. I had no early warning, not seen the road shift beneath my feet, nor learned the new language. I didn’t know if there were fellow travelers.

My cancer had probably started 8-10 years before my diagnosis, in some dark and poorly oxygenated part of my body, where some errant cell found a sweet spot to set up shop. Cells became a tumor, which became a mother ship, sending off colonizers, who found endless new sites in my lungs, “tiny tumors too numerous to count”. That eerie phrase from the CT report lodged in my head. No doubt, countless other tiny tumors, yet to be seen, were traveling throughout my body.

But now I am back home at what ever is called healthy, I may not be on any one of these apocryphal stages, hurling towards “progression”. Mine has been a round trip, or I have passed “Go” and have been able to collect my prize for the meantime. Of course, I do know that I am really just in a spur line along this journey. Sometime I am likely to be called back into the active mode again, but I will hear that alarm sooner than I did years ago, and I am now bilingual.

But eight (TEN!)years later, all the stats have changed. Rather than the 37,000, we now are quoted 57,000 (61,000) newly diagnosed patients, and still with the loss of our beloved 13,000. There are more of us, but we die less efficiently. Can that also be “progression”? How did I get home again? That story will be told soon.